Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

ANA as only diagnosis


  • Please log in to reply
3 replies to this topic

#1 Penny

Penny

    Silver Member

  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 19 March 2009 - 11:25 AM

Hello, all,

I tried to go into more depth with my mother about her diagnosis and treatment of her SLE (lupus) and was a little shocked with what she told me.

She was diagnosed in 1990, her primary care physician did some blood work including an ANA which came back positive, so the doctor sent her to a rheumatologist. My mother saw the rheumatologist one time, and was told with no further testing of any kind that she has lupus.

My mother has not seen a rheumatologist since that one time in 1990 and no further testing has ever been done! Any problems she has is treated by her primary care physician and I worry that she does not have a complete diagnosis and because of that is not getting the proper care.

She has started having seizures, but tests came back negative for epilepsy so she has some medication to take when a seizure comes on. She has painful joints and used to get cortisone shots in them but stopped because they stopped working. She has developed 'trigger fingers', just a list of things that seem to be random but to me seems more like they are connected.

I tried to talk her into seeing a rheumatologist again, telling her that she needs more investigation into her positive ANA and specific anti-body testing but she says she doesn't think she needs to since her primary care physician has never mentioned it.

I will be talking to her sister (my Aunt) who sees her own rheumatologist every six months since being diagnosed in 1982 soon to gather more information for my detailed family medical history and am tempted to ask her to have a little talk with my mother.

My father's sister (Aunt on other side) also has SLE and is having increasing troubles that she is having tested because her physician now thinks that she has other autoimmune issues as well.

Has anyone ever heard of someone getting just an ANA and nothing further with a diagnosis, and not being told to continue with a rheumatologist? I worry for my mother and seriously think that she needs to see a rheumatologist.

Thanks for any information.

Penny

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 19 March 2009 - 12:25 PM

Hi Penny,

I'm really surprised that no testing for progression/organ involvement has ever been done and quite frankly shocked that she hasn't been followed by a rheumatologist who is familiar with SLE.

As far as the initial diagnosis of lupus goes, I've always thought it is like scleroderma in that there is a list of of symptoms and usually the doctors want to see several symptoms before giving a definite diagnosis, but I surely could be wrong. Do I understand correctly that you do think your mother has lupus, but isn't receiving the proper care? (I'd agree with you there! :angry: )

Do your aunts have much influence with your mother? I think I'd get them to talk to her. There's no harm in her seeing a rheumatologist, and potentially a lot to gain.

Good luck, Honey. Mothers can be so stubborn!

Big hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Penny

Penny

    Silver Member

  • Topic Starter
  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 20 March 2009 - 02:37 AM

Jeannie,

That is exactly my concern... that she has Lupus (that with other AI condition/conditions) and is not getting the follow-up and treatment she needs.

I have spoken with my Aunts and they are taking her to lunch tomorrow for a "medical intervention" because I don't think that my Mom really gets just how serious things can get because she has not been treated.

As her daughter, I get brushed off, but her older sister (who gets checked regularly for her own Lupus) and my other Aunt (who also happens to be a Resp. Therapist/RN) will hopefully get her to see reason.
My Aunt (her sister) has already called her own rheumatologist and made sure that my parents' insurance is accepted and the doctor says that he can see her next week if she calls on Monday.

None of us had any clue that she was not being followed at all by a specialist and had only seen a rheumatologist once and that no tests other than the original ANA was done.

I think I will avoid the phone tomorrow afternoon and night because Mom is not going to be happy, but I am pretty sure she will make the appointment.

Warm hugs,
Penny

#4 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 20 March 2009 - 08:09 AM

Oh Penny,

I'm just glad all of you are doing what you can to get your mom cared for.

I'm also glad that all of you know how much better things would be for her if she had a
dr to follow her in regard to her health care.

It really is sad, isn't it...when our mothers always see us as their "little girls" and in their
eyes, we never "age"...If only it could be :D

I will keep my fingers crossed, that your aunts are successful with their intervention.

In the meantime, I will hold good thoughts for ALL of you, Penny!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)